My Path Down the Rabbit Hole

My wife and I are not strangers to mental disorders. We have one son who is in treatment for clinical depression. Another is diagnosed with pervasive development disorder, OCD, and anxiety disorder. A daughter has ADD-inattentive type (and we suspect another son may have it, as well, though he’s not be diagnosed). We have extended family members who battle depression, as well. None of that prepared us, however, for what we faced with one of our sons.

From the time my son was 18 (and maybe earlier) he battled addiction to alcohol and drugs. By the time he finally entered a residential treatment program at age 24, we had made plenty of mistakes to enable him. As he worked his program of recovery and we worked ours, however, we hoped to rediscover the son we had lost to drugs.

But this is not a story of addiction and recovery.

After a year of sobriety, our son transitioned out of the rehab, and eventually ended up living in California with his brother. During his time in California, his behavior became increasingly erratic. His mood swings were exacerbated by continued marijuana use (California had legalized medicinal marijuana, and my son had a plan to be a distributor), and in some individuals, a side effect of marijuana use is paranoia.

In time he exhibited psychotic behavior. Over a several month period, he flew home three times – only one of those trips was planned. The first time, he flew home a day earlier than the ticket we had purchased for him, using his rent money to buy his ticket; he had been told to do so, or so he said (by whom we never found out; we assume it was a voice in his head or, from his point of view, in his computer). Initially we tried reasoning with him, but in the end we realized that we simply could not.

We consulted a friend who is a therapist about how we might proceed. He outlined some of the ways in which we could get our son help; all of them included his seeing a psychiatrist and getting medication. Our son would not hear of it; he was not sick and needed no help.

Over the next few months, he shuttled between our home and California, coming home the last time because he decided he wanted help.

My wife called LDS Family Services and received information about two key resources in our area: Community Mental Health and NAMI. Community Mental Health is publicly supported mental health care, administered in our state by county. A quick phone call got my son set up in their system, after which he could take advantage of services available at a local provider.

NAMI is the National Alliance for Mental Illness, and is an advocacy group for mental health care consumers and their families. There happened to be a support group meeting the day my wife called. We attended. We told our story. We described our son’s behavior. And we learned from others who had been there, done that, that we were right to be concerned (we were relieved!), but we were completely wrong about the seriousness of the situation. It was far more serious than we had thought.

Our son was already engaging in behavior that was physically abusive to me. He was overprotective of his little sister. He was hearing voices. He was incapable of rational decision making. And he needed hospitalization. The folks at NAMI helped us know how to accomplish that. My wife helped my son see that talking with a doctor might help him feel better. She took him to an intake clinic, armed with a written list of his behaviors over the past several months. After reviewing her data and speaking with our son, the intake facility admitted our son and found him a bed in a local psychiatric hospital. There he received an initial diagnosis (severe depressive disorder with psychotic episodes), medication, and an appointment for follow-up with his local clinic.

He was in the hospital for a little over a week, and when he came out he distrusted me completely, his mother less so. Over the next few months, he was non-compliant with his medication, but convinced the practitioners in his clinic that he was compliant (we learned this is fairly common). Finally when our friends at NAMI taught us how to communicate with his caregivers at his clinic (we could provide them information, but because of HIPPA regulations, they could not provide any to us), they understood he was not compliant with his medications and they worked with my wife to have him hospitalized again.

In the second hospitalization, they found a better set of medicines that significantly improved his psychotic episodes and offered a different diagnosis (schizoaffective disorder), though we’ve come to realize the diagnosis is far less important than the effectiveness of the medications. In cases of psychosis, finding the right combination of drugs is key, and it can be different for every patient, so for some it takes much longer than others to find the right mix.

Although his medications have helped to stabilize his moods and reduce the psychotic breaks, and he learned through therapy some coping skills, it’s not all roses by any means. He still is very sensitive to stress; he does not like change; he struggles to hold any job; he still deals with plenty of issues. But compared with two years ago, we are light years ahead.

An important lesson we learned along the way was that his present mental illness is probably not related to his drug use. While drug use may exacerbate symptoms, the fact that his symptoms persist during his recovery from addiction indicate that the two are co-existing conditions. It’s more likely that the drug use was an attempt to self-medicate his mental illness rather than causing it. And frankly, the relationship between the two is immaterial. He is where he is and we are where we are, and helping him to find a path to recovery is the most important step.

We are learning our role as his advocate regarding his illness and treatment. Unlike addiction treatment, where tough love has its place, advocating for those who struggle with mental illness requires supportive care.

We are now having to think about our long term planning: will he ever be independent? We hope so. Our friends at NAMI assure us it is possible, but never certain, and relapse is always possible. We have learned to rely less on diagnosis than on effective treatment. We have tried running the gamut of disability benefits, so far without success. We are examining our own resources and future plans to see how continuing to advocate for our son will fit into the mix.

Just saying the words mental illness is frightening still, because of the associated stigma, and because of the perception that it will be never-ending. It’s odd, really. We have other chronic health conditions in our family, and those are controlled through therapy, diet, and medication. Those solutions are also available and extremely helpful in managing mental illness. Yet we live in a society in which mental illness is often not understood and often not treated.

We are grateful for the public funding of our adult son’s treatment; we could ill-afford to do it ourselves, and he has no other means of health insurance at this stage of his life. Of course more funding would lead to better care: better and more consistent therapy (he’s changed therapists four times in as many months at his clinic), better disability benefits, a better path to sustainable employment and therefore independence. But we are grateful that his medication is covered between public funding and reduced cost programs from the pharmaceutical company. And we are grateful that for now the medication works.

We are also grateful for organizations like NAMI. NAMI has provided us education and support as we’ve walked this new path in our lives.

And we are grateful for our faith in a loving Heavenly Father who knows us and our son. Our son has not been active in the church since he was 16, but he is respectful of our participation. His own reliance on 12-step programs has helped him find a spiritual path that is helpful in his continuing recovery from addiction. We have benefited from the LDS Family Services Family Support Group program, related to the Addiction Recovery Program and from Families Anonymous, another 12-step program for families with addicted loved ones. The 12-step programs, in particular, are fundamentally roadmaps to the blessings of the atonement.

Without the atonement, there is no way we could have navigated the past decade and a half, nor would we have hope for the future. But because of the atonement, we do have hope.

4 Responses to My Path Down the Rabbit Hole

Words cannot convey my respect for the love and humility expressed in this post. My guess, and I judge purely from personal experience, is that there may have been times when you felt that you had failed as parents. Reading this, I am awed by your success.

Your comments are very kind. Yes, templegoer, there are times (huge swaths of them) when we have felt like we have not succeeded. Intellectually (and especially spiritually) we know on good days (when we are thinking clearly) that we are not in a place to judge.